Familial Cancer

, Volume 5, Issue 2, pp 175–178 | Cite as

Compliance and Satisfaction with Long-Term Surveillance in Finnish HNPCC Families

  • Kirsi Pylvänäinen
  • Matti Kairaluoma
  • Jukka-Pekka MecklinEmail author


Objective: Nation-wide preventative colonoscopic surveillance for mutation carriers in HNPCC families has been organized since the early 1980 by the Finnish HNPCC registry. After characterization of MMR genes, a predisposing mutation has been verified in 111 HNPCC families and over 1500 family members at risk have been tested. The aim of this study was to evaluate the compliance and satisfaction of mutation carriers during life-long colonoscopic surveillance. Materials and Methods: Hospital records of long-term surveillance were obtained for all mutation carriers (n=664). A questionnaire assessing overall experience, willingness to continue the surveillance, painfulness (a three-rank scale), possible interruption of endoscopy and the need for pain relief medication during colonoscopy, was sent to all living mutation carriers (n=587). The questionnaire was returned by 441 persons (75%) of whom 415 persons under colonoscopic surveillance were included in the study and 26 young mutation carriers excluded as they were still pending their first endoscopy. Results: Out of 664 mutation carriers, surveillance had been interrupted in 8 cases (1.2%). Colonoscopies were described as painful by 151 (36%), uncomfortable by 161 (39%) and easy by 103 (25%) patients. Endoscopy was more often rated as painful by females (1.36, SD 0.71) than by males (0.86, SD 0.75), P<0.001. Medication for pain during colonoscopies was administered more often to females (32%) than males (15%), P<0.001. Colonoscopy had to be discontinued because of pain at least once in 10% of the patients. Conclusion: Patient compliance under life-long surveillance was excellent, but painfulness, especially in females, must be seen as a risk for compliance and the quality of endoscopies.

Key words

colonoscopy genetic councelling hereditary nonpolyposis colon cancer HNPCC surveillance 


Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.


  1. 1.
    Mecklin, JP, Svendsen, LB, Peltomaki, P, Vasen, HF 1994Hereditary nonpolyposis colorectal cancerScand J Gastroenterol296737PubMedGoogle Scholar
  2. 2.
    Lynch, HT, Smyrk, TC, Watson, P,  et al. 1993Genetics, natural history, tumor spectrum, and pathology of hereditary nonpolyposis colorectal cancer: An updated reviewGastroenterology104153549PubMedGoogle Scholar
  3. 3.
    Vasen, HF, Watson, P, Mecklin, JP, Lynch, HT 1999New clinical criteria for hereditary nonpolyposis colorectal cancer (HNPCC, Lynch syndrome) proposed by the International Collaborative group on HNPCCGastroenterology11614536PubMedCrossRefGoogle Scholar
  4. 4.
    Mecklin, JP, Jarvinen, HJ, Aukee, S,  et al. 1987Screening for colorectal carcinoma in cancer family syndrome kindredsScand J Gastroenterol2244953PubMedGoogle Scholar
  5. 5.
    Aarnio, M, Sankila, R, Pukkala, E,  et al. 1999Cancer risk in mutation carriers of DNA-mismatch-repair genesInt J Cancer812148PubMedCrossRefGoogle Scholar
  6. 6.
    Burke, W, Petersen, G, Lynch, P,  et al. 1997Recommendations for follow-up care of individuals with an inherited predisposition to cancer. I. Hereditary nonpolyposis colon cancer. Cancer Genetics Studies ConsortiumJAMA2779159PubMedCrossRefGoogle Scholar
  7. 7.
    Aktan-Collan, K, Haukkala, A, Mecklin, JP, Uutela, A, Kaariainen, H 2001Comprehension of cancer risk one and 12 months after predictive genetic testing for hereditary non-polyposis colorectal cancerJ Med Genet3878792PubMedCrossRefGoogle Scholar
  8. 8.
    Aktan-Collan, K, Haukkala, A, Mecklin, JP,  et al. 2001Psychological consequences of predictive genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): A prospective follow-up studyInt J Cancer9360811PubMedCrossRefGoogle Scholar
  9. 9.
    Aktan-Collan, K, Mecklin, JP, Jarvinen, H,  et al. 2000Predictive genetic testing for hereditary non-polyposis colorectal cancer: Uptake and long-term satisfactionInt J Cancer894450PubMedCrossRefGoogle Scholar
  10. 10.
    Aktan-Collan, K, Mecklin, JP, Chapelle, A,  et al. 2000Evaluation of a counselling protocol for predictive genetic testing for hereditary non-polyposis colorectal cancerJ Med Genet3710813PubMedCrossRefGoogle Scholar
  11. 11.
    Jarvinen, HJ, Aarnio, M, Mustonen, H,  et al. 2000Controlled 15-year trial on screening for colorectal cancer in families with hereditary nonpolyposis colorectal cancerGastroenterology11882934PubMedCrossRefGoogle Scholar
  12. 12.
    Vasen, HF, Wijnen, JT, Menko, FH,  et al. 1996Cancer risk in families with hereditary nonpolyposis colorectal cancer diagnosed by mutation analysisGastroenterology11010207PubMedCrossRefGoogle Scholar
  13. 13.
    Winawer, SJ, Zauber, AG, Ho, MN,  et al. 1993Prevention of colorectal cancer by colonoscopic polypectomy. The National Polyp Study WorkgroupN Engl J Med329197781PubMedCrossRefGoogle Scholar
  14. 14.
    Colquhoun, P, Chen, HC, Kim, JI,  et al. 2004High compliance rates observed for follow-up colonoscopy post polypectomy are achievable outside of clinical trials: Efficacy of polypectomy is not reduced by low compliance for follow-upColorectal Dis615861PubMedCrossRefGoogle Scholar
  15. 15.
    Liljegren, A, Lindgren, G, Brandberg, Y,  et al. 2004Individuals with an increased risk of colorectal cancer: Perceived benefits and psychological aspects of surveillance by means of regular colonoscopiesJ Clin Oncol22173642PubMedCrossRefGoogle Scholar
  16. 16.
    Hoffman, MS, Butler, TW, Shaver, T 1998Colonoscopy without sedationJ Clin Gastroenterol2627982PubMedCrossRefGoogle Scholar
  17. 17.
    Ristikankare, MKO, Julkunen, RJK 1998Premedication for gastrointestinal endoscopy is a rare practice in Finland: A nationwide surveyGastrointest Endosc22047Google Scholar
  18. 18.
    Bleiker, EMA, Menko, FH, Taal, BG,  et al. 2005Screening behavior of individuals at high risk for colorectal cancerGastroenterology1282807PubMedCrossRefGoogle Scholar
  19. 19.
    Ristikankare, M, Hartikainen, J, Heikkinen, M,  et al. 2001The effects of gender and age on the colonoscopic examinationJ Clin Gastroenterol326975PubMedCrossRefGoogle Scholar
  20. 20.
    Shah, SG, Brooker, JC, Thapar, C,  et al. 2002Patient pain during colonoscopy: An analysis using real-time magnetic endoscope imagingEndoscopy3443540PubMedCrossRefGoogle Scholar

Copyright information

© Springer 2006

Authors and Affiliations

  • Kirsi Pylvänäinen
    • 1
  • Matti Kairaluoma
    • 1
  • Jukka-Pekka Mecklin
    • 1
    Email author
  1. 1.Department of SurgeryJyväskylä Central HospitalJyväskyläFinland

Personalised recommendations